We apologize for not updating the Blog in a while. As for many of you, it has been a hectic couple of weeks with the Holidays approaching and the blizzard that came through.
Jetty has had a tough time here lately and didn't get to enjoy the snow. He had his feeding tube taken out last week and replaced with a "button". The procedure for removing the old tube is not quite as sophisticated as I had thought it would be. One Doctor holds him down and the other one grabs the tube and yanks. Jamie had to leave the room before hand after they told her how it was done. He handled it well but then again he is a tough little guy.
He lost almost 1lb 2 weeks ago so we are now back on EleCare formula. He is up to 12.3 lbs now which is still WAY under the normal weight of a typical 6 month old.
He isn't sleeping much because of his seizures. His seizure medicines are supposed to make him sleepy but they don't so obviously we need to make a change. The difficult part is that he is already on 3 different drugs and they don't want to add a 4th.

Below, Jetty finally dosed off after being a wake for 18 hours.